Day: February 15, 2019 (Page 2 of 2)

#HeartMonth day 5. I think without exaggerating Ellie has had over 200 EKGs and echocardiograms. When she was an infant they were horrible! She cried and screamed and occasionally threw up. Now she’s a pro. She still doesn’t like having to sit still but she always finds the will power, especially when a special surprise is offered as compensation. Every year, 40,000 infants in the U.S. are born with #CHD. These tests can be lifesaving and help these children and adults manage their conditions. They are virtually pain free which cannot be said of some of the other interventions. #CHDAware#EchoPro

Welcome to #HeartMonth day 4. Over the past 5 years, Ellie has been on and off and on again a number of meds. I remember having to give her lovenox injections twice a day for the first 7 months of her life. Her little thighs where we gave the shots were bruised and knotted. When we first started the injections, she cried and cried barley consolable tears, but after 7 months, she never even flinched. I remember when she was on a beta blocker for her tachycardia and having to time absolutely everything around those meds (she needed them every 6 hours day and night). Things are easier now with only 2 medications on board every day, but that, as well as everything else is subject to change with #CHD. #CHDAware

#HeartMonth day 3! The hardest thing I have ever had to do is give my daughter to a person I have barely met and put her life in their hands and the hands of the entire surgical team. I’ve done this twice and I still have no idea how I did it. I will have to do it again- possibly many more times, and I struggle to believe I would be able to do it again- but I will. I will find the strength somewhere because it is what needs to happen. There is no cure or preventative measures for #CongenitalHeartDefects, there is only interventions after the fact that can improve the function of heart. Below is Ellie after her second surgery, the #Kawashima in 2015. Also pictured, Pru- her stuffed dog that has seen her through all her surgeries.#StuffedAnimalSurgeryBuddy#CHDAware#PABand#Fontan

Day 2 of #HeartMonth. We are the lucky ones. Ellie’s special heart was discovered when I was 5 months pregnant. It wasn’t until she was born that her exact diagnosis came to light, but we knew we were on a totally different path at 20 weeks gestation. #UnbalancedAtrioventricularSeptalDefect is the name of Ellie’s diagnosis, but all you really need to know is that half of her heart didn’t form fully leaving her with just half of a functioning heart. Enter OSF Children’s Hospital of Illinois– a place that I had no idea existed until I was told Ellie would be spending time there having surgeries and procedures that would help the little heart she has to function as best as it can. CHOI is outstanding and staffed with people who amazed me every day. Thanks to them, Ellie is a thriving 5 year old with a bright future ahead. #CHDAware#SingleVentricle

It’s #HeartMonth and that means your news feed will be inundated with a lot of information about #CHDAwareness and our family’s personal journey with #CongenitalHeartDisease. I know this stuff is tedious and maybe even redundant but I do hope you take a moment to read some of these posts and the posts of others in this community and learn a little more about the #Number1BirthDefect and what you can do to help kiddos like Ellie. Welcome to Heart Month, everyone.